We have struggled so much as a family these past few weeks. Beyond Samuel's cancer and how that affects all of us, there have been a crazy amount of extra unusual challenges we have faced. Barry didn't know it at the time, but got into some poison ivy which he has a strong reaction to. He has been covered with the painful itchy rash for the last couple weeks. Rachel was shot at close range in the eye with a nerf gun which resulted in a scratched cornea, but thankfully nothing more serious. I've also had Patrick, Abi, and Anna into the doctor for health issues. Elizabeth is still fighting anemia and fatigue, and the baby is teething and not her charming self. This is way beyond the normal craziness for our family and our anxiety levels have been high.
Then there is our dear cat, Rosie. Her nearly 20 years of life had caught up with her and we realized she was probably in her last days with us. Last night we had to say goodbye to her and it was not easy. Our family is still grieving.
Last week I made a desperate plea for prayer. Thank you for lifting our family up! Although our problems are not gone, I have felt the burden of my anxiety lifted. I do not understand how prayer works, but I can testify that it indeed does. Our needs still remain, but we have been comforted with God's presence and have seen Him at work.
Last week we finally had the opportunity to discuss the next steps for Samuel's treatment with his oncologist. His team feels that the treatment we discussed back in April is still the best choice for him. We have been praying daily for God to impart His wisdom to Samuel's doctors and to us. Although we hate the idea of starting chemo again, we agree with this as the best option. The plan is to give him 7 days of azacitidine which he has had before and has been partially successful. Then that will be piggybacked with a new drug, Mylotarg, on the 8th day. This drug targets a protein on Samuel's specific leukemia. Hopefully, it will be the one-two punch that he needs. There is some good news in all of this. Assuming he has no complications or fevers with the chemo, Samuel will get discharged after receiving the last dose. He will not need to stay in the hospital until his counts recover. 8 days sounds so much better than a month or more! We are all so thrilled about this and are already praying for no complications.
This new drug has limited availability and requires a special request to the manufacturer to get access to it. Samuel meets all of the requirements, but needs specific labs drawn and paperwork submitted to the company. He has an appointment Tuesday in clinic to do that. He also already had an appointment scheduled with the orthopedic doctor that day as well. Thankfully we can take care of both with one trip to Indy. I was told it takes 3 - 7 days to be approved and get the drug. So, I am assuming that Samuel will be admitted and begin treatment the following week.
There are many who have stepped forward and offered help to our family. We are so humbled and grateful. Most members of our family have an independent, "we can handle it ourselves" attitude which makes it hard to not only accept help, but to even know what specific things to ask for help with. However, I feel like God is trying to teach us a lesson about allowing others to be His hands and feet. So, we are praying about this and plan on asking for more assistance for when I am away at Riley with Samuel. Please know that your prayers and assistance are so appreciated. Thank you!
- Complete and total healing for Samuel
- No leukemia growth
- Continued wisdom for Samuel's doctors and parents
- No complications getting approval for the Mylotarg
- A helpful orthopedic appointment to see the extent of his AVN and to understand how to give him pain relief
- Help in preparing our family for this season of cancer treatment and hospital stays
- Relief from the anxiety that is always trying to invade our home
- Peace for each member of our family
Still trusting in His mighty hand,